"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

Position statement from various birthmark support groups

December 10, 2009
Dear Friends:

As organizations that work to assist families affected by Vascular Anomalies
including tumors, malformations, lesions commonly referred to as birthmarks
and related syndromes we have come together to issue a joint statement on Health
Care Reform.

Soon the United States Senate will vote on the “Patient Protection and
Affordable Care Act.” This bill is more commonly known as the Health Care
Reform Bill. Many families affected by a hemangioma or malformation have expressed
concern as to how this proposed bill will affect you. We are concerned as well.
We have identified areas of this legislation that, if approved, will have a
negative impact on the treatment of vascular birthmarks/anomalies.

As patient advocacy and education organizations; our chief concern is that
the newly proposed Health Care Plan seeks to impose a surcharge on all surgeries
and medical procedures that are deemed to be “cosmetic”. This bill
additionally proposes to allow insurance companies to make this determination.
Our experience has shown that many treatments, be they surgical or laser, for
hemangiomas, or port wine stains, are denied by insurance companies because
they insurance company classifies the treatment as “cosmetic,” elective,”
or “not medically necessary.”

Our organizations have worked tirelessly helping families appeal the denial
of benefits and have won most of these appeals. Insurance companies now recognize
surgical, laser and medical management of vascular anomalies as restorative
and reconstructive but this bill will undo the good that has been done to get
these treatments approved.

Every licensed health insurance company has a published appeal process for denial
of benefits for consumers. The process allows for a review by physicians working
in the field of medicine for which the patient is seeking care. Patients currently
have a process by which they can claim medical necessity for medical care that
has been denied. While this process is lengthy and time consuming it often leads
to a reversal of the denial of benefits and allows for treatment.

The proposed health care legislation, to our knowledge, does not allow for
an appeal process. Denial of benefits will be based on procedure codes assigned
to various treatments and will make it impossible for families to appeal. This
will force families to abandon treatment or have to pay cash. Both of these
options are not acceptable to us.

Additionally the current legislation seeks to add a surcharge or a tax for procedures
determined to be cosmetic or elective and possibly those deemed as not medically
necessary. This alone is unacceptable to us but it may even mean that if a family
decides to pay for a restorative or reconstructive procedure that has been denied
coverage, there will be a penalty or tax assessed to the procedure because it
deemed cosmetic or elective.

There is one solution that would resolve the issue of denial of benefits for
the treatment of hemangioma and vascular malformations. If congress includes
a provision that declares that the treatment vascular anomalies and other craniofacial
anomalies as a medical necessity; then treatment could not be denied and penalties
would not be assessed to procedures. This provision would benefit families affected
by the spectrum of vascular anomalies including hemangiomas, port wine stains,
and other malformations as well as craniofacial anomalies like cleft lip/palate.

Other concerns have been voiced by health care advocates and patient rights
organizations. Answers to these concerns have yet to be resolved.

Out of Network Benefits: As the plan is written there is no allowance for
out of network benefits. In an effort to cut costs patients will be assigned
regional treatment zones. It will be nearly impossible to get approval to
travel out of these zones for treatment. There are several states that do
not have surgeons that treat hemangioma and vascular anomalies- how these
patients will receive treatment is unknown at this time.

Increase Cost to State Government: Many Governors have expressed concern
that the health plan will hurt the already troubled state budgets. If cost
is passed on to individual states rationing and limitations on access to doctors
and care will occur. Hemangiomas grow at a rapid rate in the early months
of development- waiting for treatment will lead to avoidable complications.

Government Guidelines for treatment: Just last week we all saw how the government
can issue guidelines to care that could be used to ration access to procedures.
The authors of the guidelines for mammography admitted to a Senate subcommittee
that their new guidelines may have been “poorly worded”. There
is concern that the government will continue to issue “poorly worded”
or reports that are based on bias data that will directly affect if patients
should receive diagnostic testing. PHACE Syndrome patients, Sturge Webber
Patients and other patients with complicated vascular anomalies required MRI
and other diagnostic screening. Rationing of diagnostic testing has a direct
impact on outcome.

Due to these concerns our organizations can not support the proposed health
care legislation. We are asking the families that we serve to consider these
concerns and then write or call your senators asking them for answers to these
important concerns.

More VBF News

Mission Statement: An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and supports research and programs that promote acceptance for individuals with birthmarks.

DISCLAIMER Information accessed through the VBF is presented in summary form in order to impart general information relating to the diagnosis and treatment of vascular birthmarks. Such information is not complete and should not be used as a substitute for a consultation or visit with your physician or other health care provider. Information accessed through VBF is not exhaustive and does not cover every aspect of vascular birthmarks. VBF makes no warranty as to the information's completeness, reliability or accuracy. Should you have any health care related questions regarding this matter, please see your physician or other health care provider promptly. Information accessed through the VBF is provided "AS IS" and without warranty, express or implied. All implied warranties of merchantability and fitness for a particular use or purpose are hereby excluded. VBF shall not be liable under any theory or indemnity. In no event shall VBF be liable for any damages, direct or indirect, and all other damages, direct or indirect, special, incidental, consequential or punitive, are hereby excluded even if VBF has been advised of the possibility of such damages.